Achalasia is a rare disease of oesophageal dysmotility, affecting 0.11 - 1.80 per 100,000 children. Diagnosis is often delayed and there is considerable variation in investigation and treatment of these children. There is a paucity of evidence regarding the optimal management of paediatric achalasia. Outcomes important to patients are frequently omitted or are inconsistently reported, which limits the value of such studies for informing practice and policy. We aim to develop a COS for paediatric achalasia, involving European stakeholders, that can be used in future research studies.
ContributorsJonathan J Neville, Iris den Uijl, Willemijn Irvine, Simon Eaton, Frederic Gottrand, Nigel J Hall, ERNICA, EUPSA, ESPHGAN
Disease Category: Child health
Disease Name: Achalasia
Age Range: 16
Sex: Either
Nature of Intervention: Drug, Surgery
- Charities
- Clinical experts
- Families
- Patient/ support group representatives
- Researchers
- Service users
- COS for clinical trials or clinical research
- COS for practice
- Consensus meeting
- Delphi process
- Focus group(s)
- Literature review
Outcomes will initially be identified from systematic reviews of the literature and stakeholders, including paediatric and adult surgeons and gastroenterologists, patient groups and allied health professionals. An online Delphi consensus exercise will then be undertaken by the same stakeholders. All outcomes will be rated on a 9-point Likert scale over three rounds to reach consensus. All rated outcomes will then be discussed at a consensus meeting. Study findings will be disseminated through research networks, presentations at relevant conferences and peer-reviewed publications. Results will also be reported to patient groups.